Everyone is always telling new parents-to-be that having kids changes your life. It certainly changed things for one mom from Basingstoke, England — but in a way that she never could have imagined.
Fiona Hooker, 32, and her husband Warren Hooker, 35, were looking forward to welcoming their second child last summer. They already had a daughter and Fiona, being a hypnobirthing teacher, knew the ins and outs of pregnancy and birth quite intimately.
But at 31 weeks, trouble started brewing.
“I got a few tiny, really itchy marks around my belly button that felt like nettle stings,” she said, according to the Daily Mail. “I went to the doctors after a few days because it was getting more and more itchy and unbearable.
“They gave me some steroid creams which didn’t really touch it and it was getting bigger — my belly was covered in red, itchy plaques.”
Fiona had to go to three separate doctors before she finally got a possible diagnosis, and it was one she desperately hoped was incorrect.
“It was the third GP I went to see that said it looked like the condition Pemphigoid Gestationis and he referred me to a dermatologist who gave me the strongest steroid cream you can get,” she said. “It was like I was allergic to my own baby.”
Pemphigoid Gestationis is a rare autoimmune condition affecting only one in every 50,000 pregnancies. Its cause is not well understood, and the condition may worsen or flare up again years after pregnancy.
“PG is caused by a woman’s immune system producing autoantibodies and mistakenly attacking her own skin, but the trigger for autoantibody production is poorly understood,” the NIH’s webpage on the condition states.
That was bad news for Fiona, because it meant things were going to get worse before they got better.
“By 35 weeks I took myself to A&E because I couldn’t bear it and nothing was touching it,” she said. “They gave me four days of oral steroids, which really helped it calm down.
“But two days before I was due to give birth it started to get unbearable again and 24 hours after I’d given birth it just exploded and turned into blisters.”
Barney was born on June 13, and Fiona’s skin went from rashy to blistered. Scratching at the rashes and blisters only provided temporary relief and caused scabbing.
Perhaps one of the most heartbreaking parts of the condition was that Fiona’s skin was so painful that she couldn’t even fully enjoy bonding with her new baby boy.
“[T]he postpartum bit when it exploded into blisters on my tummy, chest, arms and legs — everywhere you would hold a baby — that was quite difficult,” the mom said.
On June 18, a blood test checking for antibody levels confirmed the diagnosis of Pemphigoid Gestationis, and Fiona was put on strong oral steroids.
“They think it might be to do with the baby — something in the father’s DNA triggers the placenta to start attacking a protein which is also in the skin, so my body was attacking my skin,” Fiona explained.
“My son must have a gene from his dad that my daughter got me from instead because I didn’t have it with my first pregnancy.”
Finally, by Christmas, she had weaned herself off the steroids — though she still feels pain at times, and the rash could flare up again at any point, especially during particularly hormonal times.
“Once it’s triggered it’s made worse by certain hormones — [estrogen] mainly — so each menstrual cycle I may get a little flare but not enough to need any steroids,” Fiona said. “So I may have some symptoms of it forever but not as bad as before.”
Now Fiona wants to bring more awareness to this debilitating condition and has said that it’s caused her to reconsider having more children, as the condition could deteriorate even more.
“It’s put me off being pregnant again especially because the research says it will come on earlier and worse,” she said, “and I don’t think I could do that again even with steroids.”